TSC Talks!

In Part 2, Dena discusses crossing paths with Kari Rosbeck (TS Alliance President) and how she got her first position with the TS Alliance, moved to DC and never looked back. She outlines the development of the volunteer programs she initiated, and established, her process in recruiting and retaining a large volunteer network and the importance throughout of building relationships. Dena is and has been a lifeline for so many in the TSC community and her ability to continue to recruit high caliber individuals at the volunteer level is remarkable and should serve as an example for any other non profit looking for a compassionate, sustainable model for recruiting, building, training and mobilizing an exceptional volunteer team consistently, year after year. Her work doing so as VP of Support Services has supported the many progressive efforts of this award-winning nonprofit charity to meet and exceed the needs of its varied & complex constituent populations and has had a profound impact on the quality of life of those living with this chronic medical disorder, as well as their entire families and networks. Stay tuned for Part 3! (music credit: Nomadic Dawn by Alexander Nakarada | https://www.serpentsoundstudios.com
Music promoted by https://www.free-stock-music.com
Attribution 4.0 International (CC BY 4.0)
https://creativecommons.org/licenses/by/4.0/)

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The TSC world famous & beloved Dena Hook, Vice President of Support Services at the TS Alliance comes on the podcast to discuss, well, a lot. This is Part 1 of our conversation and Dena walks us through her history right up until she started working at the TS Alliance in 2007. Dena shares her experience advocating for her son with severe dyslexia in the early years of special needs legislation and how that inspired & launched her career in advocacy. She describes that it was a time when being "in the building" for a kid with special needs, was about as much support as was given. Dena was Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years training educational advocates throughout the country. She worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act in 1997. A published author through Incentive Publication, she wrote: “Success with IEPs” and “An IEP Writing Tool” for teachers and school administrators. During her time as CEO of Family and Children First, she ran Part C of the Individuals with Disabilities Education Act Early Childhood Program, Truancy Mediation, and Strengthening Families a Mental Health and Drug Addiction Program for Marion County in Ohio. She is certified as Special Education Mediator through the Juvenile Justice Center of Atlanta and as a Truancy Mediator through the Ohio Supreme Court. On a personal level, Dena also talks about leaving her job at PACER & working with OSEP to return to Ohio to aid her mother and how despite leaving an esteemed position, she was able to use her experience as a parent, advocate & then administrator to rise once again to leadership at Family & Children First in her home state of Ohio. Buckle up, there's a lot here and more on the way! (music credit: https://www.purple-planet.com)

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My guest, Emilie Peters, hailing from Oklahoma, is a Junior Leader with the TS Alliance, co-facilitator for the new TSC Young Adult Connect Group, and just received her Associates Degree from Tulsa Community College. She gives a gripping personal account of her experience with a Tuberous Sclerosis Complex diagnosis from awareness of having the condition in 8th grade to current day. She narrates some painful experiences dealing with seizures, including one particularly heart-wrenching experience during a high school softball game. She discusses many of her experiences, such as not being able to get a driver's license, trying to find adequate TSC support and a TS Clinic, living with frequent bouts of anxiety, medication side effects, switching medications to attempt to get seizure control and increasing feelings of isolation and depression. The impact of living with a chronic disease such as TSC, and not having a peer network of any kind, even feeling disconnected from her own family were the motivating factors behind getting involved in the TSC community, first through her parents and their connections, but then on her own by attending the World TSC Conference, Marching on Capitol Hill and launching the Facebook group. Today she is much more content and accepting of her diagnosis and feels as if making the connections in the community made a huge difference. She is in a relationship with a young man also affected by TSC whom she met at a TS Alliance event, has received her Associates Degree and is looking forward to getting a job, participating in and watching sporting events and living her life. My hat is off to this young lady for summoning the inner courage and bravery to risk vulnerability and seek connection and how that has transformed her entire life. (intro music by www.bensound.com)

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In this final segment, Julie goes into detail discussing her son's progress once he became eligible through a waiver funded by the Louisiana Department of Health’s Office for Citizens with Developmental Disabilities. Julie was able to hire a Direct Support Professional of her own choosing to work one on one in the home, community, and more. Over time, her son was able to lessen the grip of a narrow focused interest/obsession with trains for which Julie and her family had gone to extremes in order to address. She gives a thorough look at the process of becoming eligible for this type of service, finding a good match and how through collaboration between herself, her son and this worker, hope for a better future has been reignited.

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In Part 2 of this 3 part episode, Julie Comeaux gives us more details on the events that happened with her son leading up to filing a systemic complaint as well as having one filed against her. This ultimately led to filing a systemic complaint against the state department of education. She ended up taking her son out of the school system to homeschool. Julie describes the tools she used, including Ross Greene's methods, the decision to start psychiatric medication, and more. Julie exemplifies an example of how educating one's self on special education law, perseverance, patience and grace under pressure, plus faith in her son's competence can affect change.
(www.bensound.com)

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In Part 1 of this series, Julie Comeaux begins to give an inside look at her experiences in the education system in Louisiana with her son that has TSC. She has attended multiple parent training events on IEP, 504, Transition, and SPED Law 101 and believes that parents can be educated to be the best voice possible for their children, sometimes, the only voice! Stay tuned for more detail on this rocky ride with misunderstanding, fear, and ignorance, in this case in the local school district, that we often encounter related to various behavioral manifestations of TSC, what can go wrong and how persistence and inner fortitude are necessary to affect change. (intro/outro music www.bensound.com)

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Continuing our conversation from Part 1, Chelsea talks a bit about difficulties with the local school system, coping with stigma, mental health issues, seeking support, finding the moments and living them, rocking out to AC/DC, thriving with Thrive nutrition and more! (music by www.bensound.com)

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My guest, Chelsea Holman, is a TSC Mom from Nevada. Impacted personally by TSC, having a son, and various other family members affected with the diagnosis, Chelsea gives a raw look at receiving a diagnosis later in life, managing and reigning in chaos with medications, diet issues, depression, judgments from outsiders, amazing resolution of kidney issues, using CBD oil, angiofibromas, doctor run around, and more. This is part 1 of a 2 part episode. Throughout, Chelsea shares from her heart and soul with honesty, compassion, much inner fortitude, and love. (intro music: https://www.bensound.com

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Alex Skuby, Actor, Co Hosted the recent Comedy for A Cure Fundraiser for the TS Alliance and was kind enough to come on TSC Talks, share some laughs and give me the low down on life. He shares from his early years growing up in NJ, how he got into acting, by taking Acting 101 in college on a whim, falling in love with acting, it's therapeutic value, moving to Chicago in 1996 to pursue a career in acting, then moving to LA in 1998, landing some regular roles on TV series, particularly as Carrie's boss on King of Queens, the highs and lows of show business, his passion for live theater, dealing with challenging life events, family, parenting, "bad" habits, diet, exercise, meeting his lovely wife Mo' Collins, their connection with the TS Alliance, & Co-hosting Comedy For A Cure. We wrap it up with a brief discussion of his new podcast "Skuby Talk", the joys of podcasting and more!
Music Credit, "Lucky Stars" www.woodywoodworth.com

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My guest Briana Johnson is 21 years old and lives in Scottsdale Arizona. She'll be graduating this month from Grand Canyon University with a bachelors degree in marketing. Over the past few months, she had the opportunity to be a national Junior Leader for the TS Alliance and represent Arizona advocating in DC this past March. She was diagnosed with Tuberous Sclerosis Complex at age 3, initially with skin symptoms. Brianna discusses the challenges related to transitioning to adult care, kidney issues and surgery, and how the Mayo Clinic created a clinic based on their experience with Brianna! We touch on her go-to coping mechanisms, humor and sarcasm, transitioning to college and managing her medical needs, her experience as an advocate representing Arizona at the March on Capitol Hill and the exciting new Facebook group she helped create for young adults with TSC to be a safe space for other young adults with TSC (age 16-24) to share their stories, to make connections and discuss aspects of dealing with the disease and provide peer support to one another, and to share resources. "Our goal is to make sure no young adult with TSC has to face this fight alone" Thanks Briana! (music credit: www.woodywoodworth.com "peace like a river")

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